Hero Award for Malaysian LSD Association President Ir. YeeSeng Lee

Hero Award for YeeSeng Lee, father of two Pompe girls and President of Malaysian LSD Association

Ir. YeeSeng Lee lives in Malaysia and is father of two lovely Pompe girls named Yen Ling and Wei Ling and one son who is unaffected. He works with the Malaysia Electricity Board 'Tenaga Nasional Berhad', but at the same time he is also the President of Malaysia Lysosomal Disease Association. It is an association set up for the benefit of all Lysosomal Storage Disease patients.

On 17th April 2014, he was given the 'My Hero' award by the Kuala Lumpur and Selangor Chinese Chamber of Commerce and Industry (KLSCCCI). He was chosen as he fights for the whole nation. Ir. YeeSeng Lee says: "It was a great honor for me to receive the "My Hero" award. Getting this award means so much to me, it is recognition of my hard work that came at the time I most needed it. I felt frustrated at times. After years of trying to get our Ministry of Health to review their existing Enzyme Replacement Therapy funding allocation, nothing had changed. Our government still refused to increase the old budget. Currently the doctors are treating 15 LSD patients with this limited budget.

His daughter suffered from under dosage. The Malaysian government does provide funding for LSD treatments, but they forgot to include the increase of dosages that are needed when children grow up and the additional funding of newly diagnosed patients. This causes a lot of problems as treated patients are under dosed and new patients are not able to receive treatment. YeeSeng Lee even wondered if he was doing the right thing by helping others: "I seemed to have getting in more patients at the expense of my daughters and other already treated patients. I have a few close friends and relatives that asked me to stop the fight further as they worried my action to support all LSD patients would bring more harm to my daughters. But deep in my heart I knew this was the only thing I could do to help my daughters in the long term. A proper system is needed to properly address the medication dosage problem."

YeeSeng Lee would like to share this award with all the LSD communities, "without them I will not be getting this award. It is them that motivate me to work hard on this advocacy journey. I hope with this award, more will come to know about LSD diseases and the relevant ministries will understand our patients need and approve a larger ERT funding."

While going on this journey he understood that it is very important for all LSD and other rare disease communities to be sharing experiences with eachother. It is not only to unite the people, but also to provide a good support to everyone to keep motivated. For that, he would like to thank the International Pompe Association (IPA) for sponsoring a representative of his association to attend the annual Pompe meetings since 2012. YeeSeng Lee: "We learnt a lot of new things and received valuable information. For instance, I had been worried over the under dosage of the treatment in my daughters for a while, but I couldn't get any good comment from any of the doctors on the impact of the under dose. Finally, last year, my wife Kian Foon who had attended the GSD symposium in Heidelberg (Germany) brought back very valuable input that under dose of treatment will not help our daughters at all. With that piece of information I started to apply for 'top up' medication through my employer. I am happy to share with you that my company had recently approved on the budget to pay for the additional needed medication until my daughters turn 18 years old. Truly, Together We Are Strong."

YeeSeng Lee hopes every Pompe patient will get the fair chance to get treatment no matter in what country they live. Additionally he hopes that with more scientific research, a better treatment will be available to treat skeletal muscle weakness of Pompe patients. The Malaysia LSD Association just lost a MPS III patient a few days ago as treatment was still not an option for him.

YeeSeng Lee hopes Malaysia will have a sustainable medical funding system for all LSD patients soon.